Tuesday, May 7, 2013

The price of normalcy

This might be a tough post to read, so I'm apologizing in advance. But I don't shy away from the tough stuff, because truly, that's what life is all about, and I find that is where God shines through my writing the most. So, here goes...

We have worked very hard at allowing Bodie to live as normal of a life as possible in spite of his completely abnormal physiology. Of course, we couldn't do this at the beginning when he was inpatient for so long. But since then, I really think we've been successful with that. I would say we take pride in it, but really it has nothing to do with us, so much as it has to do with God blessing us with enough stability in Bodie's health that we're able to allow him this normalcy.

He goes to the nursery at church on Sundays and loves it. He comes with me to watch Sierra at gymnastics and runs around like a maniac, climbing the bleachers and screaming excitedly at the kids climbing the ropes (wish I could say everyone appreciates his excitement as much as we do, but, well, we all know that wouldn't be the truth. Ha!) He plays at the park, he goes bananas at the indoor play structures at McDonald's. He rides in the basket part of the shopping cart (and I don't sanitize it before putting him in - gasp!) He gets all up into germy stuff and we just say "ok, he's living his life." He once ate potato chips from between his toes (true story). (And ok, if I'm being completely honest, I cringe when he gets into the icky, sticky stuff since I don't do that too well - but he loves it, so we let him into it.) This kid has an insane zest for life and we don't shelter him from life - AT ALL.

He goes to preschool 3 days a week all day and LOVES it. He is absolutely thriving there. Yesterday, when I dropped him off, there was a book in his folder with pictures and artwork from his past few months at the school. It included this picture.

It just made my heart smile to see this picture. It honestly was everything I never dared to dream of when I was pregnant with him. He was just playing with his friends at school, goofing off, having a blast just like any other 3-year old at preschool. His teachers have welcomed him with open arms and let him just be a "normal" kid.

Herein lies the rub. Bodie thinks of himself as just a "normal" kid. He does know about his heart, but I'm pretty sure he thinks every kid has had multiple surgeries. This "normal" kid is now out of his beloved preschool and on quarantine from large groups of people (other than his Mother's Day Brunch at school this Friday) until May 22nd for his cath. And then he'll be going into the hospital where he'll have iv lines placed, be put under and have dye injected into his heart - and may have part of his heart cauterized (that's a fancy word for burned). And that's nothing compared to what is coming in July.

And, as his parents, we have to explain this all to Bodie. And make him as ok with it as possible. And thank God for the resiliency of children. Let me say that again. Thank God for the resiliency of children.

There is a part of me that feels like maybe if we sheltered him a little more, or allowed his heart to limit him a little more, all of this would be a little bit easier to prepare for, for him and for us. That, if he looked at himself as medically fragile, the medical procedures wouldn't come as much of a surprise. That part is small, but it is still there, nagging a little bit.

I don't regret anything we have done to allow him as much normalcy as possible and wouldn't have done this any other way. As long as his body will allow it, we will always allow him to live life to the fullest. But as with every decision we make as parents, our decision to let him life a "normal life" does come with consequences. This is one of them.

We covet your prayers in the weeks and months ahead as we prepare Bodie, Sierra, and our entire family for this - and that we manage to maintain as much "normalcy" as possible.

10 comments:

Praying. I think you've done the right thing. You'll get through this. God's grace only comes in the moment it's needed.PS-I've kinda enjoyed "lock-down." It's been a good way to focus more on my kids.

I can relate to all of this! We have lived worry-free in all sorts of child-centered germy places for the past year. From spending Mason's first year and a half in isolation, it was so nice to get out and just be normal.

Like you, we've got a cath coming up that we're in isolation for. Not only does Mason not really understand, my 4yr old isn't real excited about it, either.

Oh friend, you have hit the proverbial nail on the head for me. I literally get breathless when I think about Luke realizing what's in store for him. He has NO idea. Just the other day a family friend was talking about heart problems and said something like, "Kinda like your heart problems, Luke." Luke looked at him like he was crazy! "I don't have any heart problems!" What in the world?! I know we've let him live fully, but he is really in the dark and that scares me for when we face the Fontan. Bodie (and all of you!) are in my prayers.

I also do not shelter Stevie, and I've never thought of what could lie ahead with his next surgery. I sure do wish you guys all the best. Praying that it goes smoothly. Eventually he will understand you always did what was best for him.

Beautifully written- you are an awesome mom and finding that "balance" with these special hearts we've been given is a challenge. I think you're doing amazingly well and Bodie will too because he's got you! Keeping your family in my prayers...

You said it perfectly and beautifully, and it's 100% truth for a heart mom...Praying the upcoming cath and surgery and for your momma heart to find peace and rest in God's perfect plan and timing. Hugs!

Enjoying all the pictures you post. You have 2 beautiful children. I love the pictures of Bodie when he is "shall we say, a little unhappy." Very cute and the bottom lip says a lot. LOL Prayers are with you and yours.

"For you formed my inward parts; You wove me in my mother's womb. I will gave thanks to you for I am fearfully and wonderfully made; Wonderful are your works, And my soul knows it very well."
-Psalm 139:13-14

The first time my heart walked around outside my body

My rock, the wonderful man on this journey with me

Me

I'm currently a happily married stay at home mom to my beautiful children Sierra and Bodie. Our life's a bit challenging at the moment, but we thank God every day for the opportunity to love our children!

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The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."